Mary-Claire King is one of the most important biomedical researchers of the last half century. King is best known for her discovery of the BRCA gene family, now used as a vital diagnostic tool for breast cancer risk. The BRCA gene saga is pivotal in understanding the role of intellectual property in biomedicine. Shortly after King’s discovery, Myriad Genetics, a company out of the University of Utah, sequenced the genes and filed patents for them. Myriad locked up use of these genes for years (until the Supreme Court invalidated the patents), slowing research and preventing countless women from gaining access to tests that used the genes. If you’re a proponent of the public owning the results of public-funded research, the BRCA gene story is a textbook case, one that makes clear that access to the papers written about the results is small potatoes compared with access to the results themselves.
King is a remarkable figure, leading the fight against the patenting of genes, as well as applying genetic techniques to identify victims of human rights abuses. She has led a fascinating life, filled with some of the most amazing stories, one of which you’ll see in the short video below. It starts off with the worst week of her life, as she struggled to get to Washington to secure the grant that would lead to the BRCA discoveries. From there, it eventually runs into a completely unexpected punchline that continues to blow my mind.
For more about King, see also this in depth interview conducted by her colleague Evan Eichler. Great stuff.